serum sickness

[Hawaii Bill]

Hi Hopeful,

200mg bid sure sounds high for your weight, since my dosage is the same and I'm 240 lbs; but Dr Paquette at UCLA told me there is no established "therapeutic" dose of CsA for AA. I think what they try to do is give enough to you to keep it at a constant level; there is something called a "trough" level that I think is a threshold for transplant patients, who also depend on CsA. At any rate, my guess is that they will adjust your level to keep it as high as it needs to be, theoretically.

When I was being treated in the hospital in Dec 2006, I was on 300mg bid. At that level, it caused a lot of reflux, and I could not wait to lose that side effect. At 200mg, I can even take it without food, but I try to avoid that.

At this point, I would swear by Neoral. It seems to be the best for me.

[Lynn del]

Jez:

I had rabbit ATG in March, 4 days later the serum sickness started. I took prednisone 20 mg. and the pain wasn't as bad. They didn't put my on cyclosporine because last time I had horse ATG I had a reaction to it. Anyway, I have to go to the doctor almost everyday because my counts keep falling. I get neuprogen shots and transfusions. I still have serum sickness, but I can't tolerate more prednisone. When I had the horse ATG I didn't need transfusions and my counts started to respond. Did you need alot of transfusions after your ATG? My ferritin level is really high. If you did need transfusions and newprogen shots - how long before your counts responded? Thanks, Lynn

[JEZ]

Originally Posted by Lynn del

Jez:

I had rabbit ATG in March, 4 days later the serum sickness started. I took prednisone 20 mg. and the pain wasn't as bad. They didn't put my on cyclosporine because last time I had horse ATG I had a reaction to it. Anyway, I have to go to the doctor almost everyday because my counts keep falling. I get neuprogen shots and transfusions. I still have serum sickness, but I can't tolerate more prednisone. When I had the horse ATG I didn't need transfusions and my counts started to respond. Did you need alot of transfusions after your ATG? My ferritin level is really high. If you did need transfusions and newprogen shots - how long before your counts responded? Thanks, Lynn

Lynn,

I had ATG the first week of January 2007. I stayed in the hospital 6 days on IV steroids. I was sent home on 150 mg. of prednisone with the plan that I would gradually wean down the dose each week. Within 2 days of discharge, I developed serum sickness. I was readmitted and stayed about 10 days. I was given IV steroids and the serum sickness was resolved but I had to go home on 200 mg of prednisone. I won't go into details about the reaction to all that prednisone but I was miserable and could not stay alone or drive. I too wondered if it was all worth it because I felt worse after the treatment. I started cyclosporine generic (I forget the name but I think it started with an i) in mid February and did not respond.... needed weekly transfusions of platelets and periodic transfusions of RBC for the next 2 months. At one point my platlets were only 3000. My doctor switched me to Neoral (a brand name drug) in April and I finally started responding. I had my last transfusion in April of 2007. The platlets and all my counts gradually climbed over the next 1.5 years until November 2008 when I had my first normal count or 166,000 platelets and normal RBC, WBC, Hg, and HCT, etc.

[Lynn del]

Hi everyone:

I had my ferritin level checked and it is really dangerously high. The doctor gave me Exjade. The rx is 500mg. 3 times a day. I took 1 500 mg. and I got nausea, dizzy and cramping. Then my whole body started to shake and I became very itchy all over. I had to take 3 showers, benadryl and put benadryl cream all over, then another shower. I am very sensitive to any med. They said I was having an allergic reaction to the med. I've been having so many transfusions lately, so the ferritin level is now 5090. I know I have to take it so it could pull the iron away from my heart and liver, but it is so dangerous, especially with people with bone marrow failure. They just put a new warning on the label. So the med. can cause death but not taking it will cause death. This is a "catch 22".
Has anyone else taken exjade? And what where the results?
Any help would great !! Still in serum sickness and alot of pain, Lynn

[Lynn del]

Jez:

I felt the same way after the ATG. I was worse than when I went in. My counts are still not responding, and I couldn't be alone when I came home or drive. The serum sickness is bad, the pain is unbearable. Down my legs and arms the skin is numb, and if you touch it it is very painful, then, of course, there is the shooting pains. And then there is weakness. I haven't heard of anyone else getting the numbness/pain. I had it last time with the horse ATG, but not as bad. I think it helps if you have a good support system but I don't have that with my family.
Now I have to take exjade, and I'm having an allergic reaction to it.
How is everything now, are all your count normal? Hope all is well with you and God Bless, Lynn

[Marlene]

Have you tried Desferral yet? It's safer than Exjade but it's not oral so it's more involved. Your first dose should be administered in the doctors office. It should be a lower dose and infused over long period of time.

Many side effects from Exjade are dose related. Many docs stop treatment with Exjade until the side effects go away and then restart at lower dose. Maybe 250mg/day to start with. For many, after they restart, they no longer have the hives/itching.

John never got to a full dose of Exjade and eventually stopped it because his Kidney function test were going up.

[Lynn del]

I still have serum sickness from the rabbit ATG. But now my platelets are 2 and ANC 800. This is a shock since they were stable and going up for the last 2 weeks. I since started exjade and have increased the doseage to 500 mg a day with benadryl. Has anyone had this problem. The counts dropped so drastically so fast. I have to go for platelet transfusion today and neuprogen shot. I guess the ATG didn't work, I'm worse now then I was before. I have to take the exjade since my ferritin level is 5900. I'm desperate, and if anyone could suggest anything it would be helpful. My e-mail is del1134@yahoo.com or post on marrowforum. Thanks. Lynn

[Marlene]

Lynn,

I replied to your private message.

I would stop the Exjade immediately. Cytopenia (dropping blood counts) is a rare side effect of Exjade. And seeing that you have problems with it already, I would not take any more chances with it.

Desferal is safer.


Marlene

[JEZ]

Originally Posted by Lynn del

I felt the same way after the ATG. I was worse than when I went in. My counts are still not responding, and I couldn't be alone when I came home or drive. The serum sickness is bad, the pain is unbearable. Down my legs and arms the skin is numb, and if you touch it it is very painful, then, of course, there is the shooting pains. And then there is weakness. I haven't heard of anyone else getting the numbness/pain. I had it last time with the horse ATG, but not as bad. I think it helps if you have a good support system but I don't have that with my family.
Now I have to take exjade, and I'm having an allergic reaction to it.
How is everything now, are all your count normal? Hope all is well with you and God Bless, Lynn

Lynn,

Thank you for your concern for me at a time when you are going through so much... I wish I knew more about iron overload and the meds you are trying. Know that my heart felt concern is with you.... I have just had to stop my cyclosporine after a successful 2 year run with it (indications of kidney toxicity) and am trying a new drug (generic Imuran) as an immunosuppressant... my counts are terrific now and I am hoping and praying they stay that way. I just stopped the cyclosporine yesterday and started the Imuran 2 wks ago..... Hope all has turned around for you.... JEZ

[Lynn del]

Hi Jez:

THis was a bad week, my platelets went to 2 and my ANC 800. I had 3neuprogen shot and platelets transfusions on Tues and then on Friday, 2 bags. Anyway, my ferritin level was 5090 and now it's 3554 in only 2 weeks being on the exjade, and taking only 200mg - 350mg a day. I was suppose to take 1500mg a day. Monday my rbc was 10.2 and Thurs 10.4, I had a rbc transfusion on May 13. I hit the 2 month period on Friday, May 22, and still have serum sickness, but it's getting a little better. I asked the doctor for cyclosporine and he said there are too many side affects since I don't do well with meds.
I have heard of Imuran, my father took it for reumatoid arthritis. I hope it works well for you, and your counts rise to normal and stay there for many, many years. Lynn

[JEZ]

Originally Posted by Lynn del

Hi Jez:

THis was a bad week, my platelets went to 2 and my ANC 800. I had 3neuprogen shot and platelets transfusions on Tues and then on Friday, 2 bags. Anyway, my ferritin level was 5090 and now it's 3554 in only 2 weeks being on the exjade, and taking only 200mg - 350mg a day. I was suppose to take 1500mg a day. Monday my rbc was 10.2 and Thurs 10.4, I had a rbc transfusion on May 13. I hit the 2 month period on Friday, May 22, and still have serum sickness, but it's getting a little better. I asked the doctor for cyclosporine and he said there are too many side affects since I don't do well with meds.
I have heard of Imuran, my father took it for reumatoid arthritis. I hope it works well for you, and your counts rise to normal and stay there for many, many years. Lynn

Well, if you ever do take cyclosporine, take the Neoral (brand name) as it was soooo much better than the generic and the only one that I responded to. It took me 3.5 months after ATG to see the beginning of a turn around. I too had severe serum sickness right after the ATG but was hospitalized and given massive doses of steroids IV to get rid of it... after about 2 wks. in hospital it was gone. I just have AA... not any of the other marrow disease... at least for now and hopefully forever. My heart is with you... it is such a tough row to hoe.... stay the course... and I pray you get nothing but the very best that medicine has to offer.

JEZ

[Vera W]

I read all of your stories and my heart goes out to you all, so many private battles going on! Sometimes it overwhelms me. It makes my battles seem so small. I think it helps knowing that we are all rooting for each other! Always in my prayers, Vera

[Lynn del]

Hi everyone:

My counts continue to drop drastically. Yesterday after a platelet transfusion on Wed they were 2, so I had another transfusion. Last night I had severe large petecei all over, brusing and blood blisters in my mouth. I stopped the exjade and diflucan, and I am on 10 mg. of prednisone for the joint pains, which isn't helping much. I've had a headache for 2 days now. All my counts are dropping. Tues. wht 4 - Anc 2400, Fri wht 3.5-Anc 1400, rbc Tues 9.4 - Fri 9 platelets were 3 on Tues and I had a transfusion then on Fri they were 2 and I had another transfusion, then the petecei and bruising last night.
I was better off before the rabbit ATG. Has this happened to anyone else, because when I had the horse ATG I didn't have any transfusions and my counts responded within 6 -8 weeks of treatment, but my platelets only went to 40. I'm really nervous!!! Any help would be appreciated - desperate, Lynn

[Lynn del]

Hi everyone:
Yesterday I went to the hospital. I had 2 bags of platelets and they went up to 2, so I must have zeroed out. Then I had 2 bags of rbc they were 7, and 2 more bags of platelets. I have to do back today to get checked. My platelets never went this low, and I was covered with petecei and bruises. THis can't continue, something is killing off my cells as soon as I get them. Lynn

[squirrellypoo]

Lynn del -

I replied to your PM but for anyone else here, I also stopped responding to the usual platelet pools and then also to single donor platelets but HLA matched platelets have worked really well for me, usually making me increment about 50 points per bag (I have to have another count about an hour after each bag just to be sure). I've only had one bag that didn't take, as I apparently already had antibodies against that particular person despite the matching.

The other thing that really has helped with the bleeding and petechiae when I'm between transfusions is Tranexamic Acid, which makes the blood "sticky" and really makes a difference for me. I take 1000mg 4 times a day when my platelets are low (I can usually feel it or see the signs) which is great if it happens to fall on a weekend when the haematology day units are closed.

[Marlene]

Lynn,

I too sent you a PM. Kind of along the same lines in that they should look at matching your platelets.

Your doc should also check your clotting times to make sure you clotting factors are functioning. Vitamin K is needed for proper blood clotting.

We would add in jello....he took the old fashion Knox gelatin. There was a reason they gave people jello when they had surgery....gelatin has clotting factors. We basically made up 1/3 of a pack, added OJ and drank it.

Marlene

[Lynn del]

Last weekend was really bad. I got petichiae all over and blood blisters in my mouth. The doctor made me wait until Sunday to go to the hospital. By that time I was bleeding out. My platelets were -0-. I had 4 bags of platelets and 2 red packed and Mon am my platelets were 1. Monday night I receive 0- random donor, 2 bags and my count went to 9. Tues I had A- single donor bag and the counts dropped again. Fri I has the HLA platelets, 2 bags, and it felt like they were my own, and my body wasn't in any destress. I haven't had a feeling like that ever with a transfusion. They are getting more from the same donor for next Wed.
They gave me Prograf, it's like cyclosporine. I just feel awful all the time. My body has been through so much and bottoming out didn't help. Now they tell me that it take 3 months for the rabbit ATG to work. Maybe 6 months. And on top of all this I still have serum sickess. God must be really testing me "to the limit". But I will fight the fight and win !!!! Thanks to everyone, Lynn

[Lynn del]

Marlene:
Thanks for all your advice. I stopped the exjade and diflucan,which probably bottomed me out. I'm going to try the Jello. Do you have to drink it or can you make regular Jello? I'm still on prednisone but they are lowering the dosage. THe prograf makes you cytopenia also, esp the platelets and white cells. Plus all the other side effects. For kidney failure I found out that putting watercress and 1 cup of water in a blender and drink it thru the day suppose to help, I'm going to try it. I know walnuts help the liver, because I did try it, and it worked. I ate 4 -5 walnuts a day and my liver went back to normal after the horse ATG. Also, milk thistle helps the liver.
Thanks, Lynn

[Marlene]

Yes, you can make regular jello from the Knox gelatin powder. I don't think the pre-mixed "JELLO" boxes are the same though.

It really did help John when his gums were bleeding.

Do you think the serum sickness may be related to all the "unmatched" platelets your body was destroying which caused the pain/fevers, and that maybe it will get better as long as they continue do HLA matching for you?

[Lynn del]

Hi Marlene:

Yes, I think now that it's related to the platelets. My body goes into a "destroy mode" and it goes after 'all' the platelets. The 0- platelets I got from random donors I could tolerate, that's when my count went from 1 to 9. I am going today to see how the HLA platelets worked, but I'm so sick today with a gum infection that's going thru my body. I PM messaged you, reply to mind. I hope you get it. It's as if we all have to become doctors and tell the doctors or fight with them to get what we need. Their ego plays a part in this for sure. Lynn

[Lynn del]

Hi everyone:
I had my cuonts checked and my platelets are "1" again !! I think it's from the Prograf, but I only have been taking 1 and I was suppose to take 2 two times a day. I don't know what to do? When the nurses called the red cross for platelets, they found out that the red cross HLAed someone else and already sent the platelets to my hospital. That was amazing. So I am going tomorrow for platelets again. I feel weaker and weaker. I wish the rabbit ATG would kick in and work. Pray for me, Lynn

[imckinne]

How long after ATG could the serum sickness still ocurr? Mom is almost 4 weeks out and, although she's had other major complications, she seems to have no signs of serum sickness and I'm wondering if we can believe that she's been spared that horror. In addition to the prednisone, she'd been on high doses of another steriod to reduce vascular inflammation from the brain and back bleed she experienced during the treatment (despite a morning transfusion her platelets had dropped to 7000 and they were having difficulty regulating her blood pressure in response to the ATG). I'm wondering if the extra steroids may have helped avoid the serum sickness.

[Hopeful]

Hi,

It is my understanding that the risk of serum sickness is greatest for 14 days following ATG. I was tapered off of prednisone by 4 weeks post-ATG. So, she likely is over the risk of serum sickness if she is almost 4 weeks out.

[Lynn del]

Hi everyone:
I have been tapering off the prednisone and the joint pains have returned. I have been going to the hospital every other day for platelet transfusions and sometimes red cells. Yesterday my platelets were "1", last week they were between 5 - 6. I'm not getting rigors anymore unless they give me platelets other then 0+ or 0-. THe HLA platelets didn't seem to make a difference. And they said I have no antibodies, even though I have had sooo many platelet transfusions. THe white cells are 3.4 with ANC 1600, red cell droppingnow at 8.5 but I had a transfusion of them on FRiday. I was doing okay until I took the exjade. But now it should be out of my system but my counts have not come back. I was reading Ryan's story in the AA bulletin and he had EPO injections. I never heard of them before. Has anyone? My doctor want me to go for a BMT but it's only been 3 1/2 months since the rabbit ATG. I had a bad reaction to Prograf, hyper, shaking, and itchy, and I was only taking a quarter of the doseage, so I stopped taking it. I was better before the ATG. Lynn

[imckinne]

Monday morning my mother was in terrible terrible pain and my first thought was that it was serum sickness despite the fact that over 4 weeks had passed since the ATG. Unfortunately, it turned out to be Gram Neg sepsis. SHe now has some damage to her heart valve but otherwise seems to be responding to the antibiotics again. SHe's been through so much and it's so hard to imagine that she will ever recover from the side effects of treatment....and, of course, we don't even know if the ATG will do anything for her.